Events and Media
Save the Date!
Primrose Family Community Meetings (Virtual)
Join us the last Thursday of each month for our Family Community Meetings!
To accommodate different schedules and time zones, we offer two meeting times (1:00 PM and 9:00 PM EST)
During the meetings, we will share:
• Beyond Primrose Foundation updates
• Current research updates
• Opportunities for families to connect, ask questions, and support one another
Join whichever session works best for your family. We hope to see you there!
Next Meeting: Thursday, July 30: 1:00 PM EST and 9:00 PM EST
Future Dates:
Thursday, August 27 at 1:00 PM EST and 9:00 PM EST
Thursday, September 24 at 1:00 PM EST and 9:00 PM EST
Fall 2027
Primrose Syndrome Innovation Summit
Beyond Primrose excited to host the inaugural Primrose Syndrome Innovation Summit to be held in the Fall of 2027. The conference will be held in United States with a hybrid option for international participants or those unable to travel. This conference will bring together patients, families, clinicians, researchers, advocates, and industry partners to share knowledge, identify community priorities, and develop a coordinated plan to advance care and research for Primrose Syndrome.
Families interested in attending the Innovation Summit please complete the following BRIEF QUESTIONNAIRE to help us gauge interest and prepare for the event.
Healthcare professionals interested in attending as a participate or a speaker please contact us at info@beyondprimrose.org
Previous Events and Media
Beyond Primrose at the Million Dollar Bike Ride
June 13, 2026: Philadelphia, PA
The Million Dollar Bike Ride is an annual cycling event hosted by Penn Medicine’s Orphan Disease Center that brings rare disease communities together to raise awareness and fund research.
Thank you to the Orphan Disease Center for hosting the 2026 ride—and to Team Beyond Primrose for an inspiring, fun-filled day! Together, we raised awareness for Primrose Syndrome and showed our children and families that they are supported by a strong and growing community.
Rare Disease Scientific Symposium
March 2026: Arlington, VA
Thank you to the National Organization for Rare Disorders for hosting the 2026 Scientific Symposium last week.
An amazing event that brings together patients, advocates, researchers, clinicians, and organizations united by a shared mission to improve the lives of those affected by rare disease.
So much gratitude to all of the speakers for sharing their time, expertise, and commitment to advancing the rare disease field. Beyond Primrose is excited to be collaborating with such an incredible organization and deeply appreciative of the support NORD provides to the rare disease community every day.
Rare Disease Day Webinar
February 28, 2026
Beyond Primrose ZBTB20 Foundation hosted its first international Primrose Syndrome webinar, bringing together families, clinicians, and researchers from around the world. The event featured updates on our growing community, research momentum, and opportunities to work together to accelerate progress.
Guest speakers represented our Scientific Advisory Board, Unravel Biosciences, and the Stanford Coordination of Rare Diseases at Sanford (CoRDS) Registry.
How Logan Strong Became Beyond Primrose ZBTB20 Foundation
November 2026
Megan and Peter Manotti joined Good Day PA with their son Logan to share their family’s journey with Primrose syndrome—an ultra-rare genetic condition caused by changes in the ZBTB20 gene.
Following Logan’s diagnosis, their family founded Beyond Primrose ZBTB20 Foundation to connect families, raise awareness, advance research, and build a brighter future for everyone affected by Primrose syndrome.